Family matters at Field Lane
Pictured above: Neil, Simon's dad (second left) and Simon (second right) with his mum (centre) and two sisters
Simon has been a client with Field Lane since 2014. He is diagnosed with autism. We recently had a conversation with his dad, Neil to find out more about his and Simon's experiences of living in one of our supported-living projects.
Why did you choose Field Lane?
Simon, our son, had been away at a residential college in Wiltshire for three years and the time was coming up when he would be leaving to come back home. Although we knew he’d be happy living at home, we were concerned that if he moved back in with us, he wouldn’t achieve any real independence. We discussed the options with Simon and ultimately agreed that the best option would be for him to move into supported-living accommodation. We started the process of trying to find him a suitable place locally, engaging with his social worker to see what was available; we wanted him to live nearby. The options were very limited at that time. He could move into a place with other residents more than twice his age, which would not have worked in Simon’s best interests. Alternatively, Mencap approach us about Simon taking a room in a house they were setting up, but this would be for only three people, and we didn’t think this would work for Simon. Then we heard about a new house Field Lane had acquired in our area that would be for six supported-living residents of similar age to Simon. Being on our doorstep, it sounded ideal for all of us. We applied and waited anxiously to find out whether Simon had got a room. We were in New York on a family holiday when the call came through to confirm his place and it was such a relief, I burst into tears there and then! It’s a moment we won’t forget, when everything came together so perfectly, and Simon moved into the Field Lane house. It was August 2014; he was 22 and one of the first residents to move into the new house. Before then we hadn’t heard about Field Lane and didn’t really know how the care model worked. But the sense of relief when it all came together was palpable, we couldn’t have been happier with the outcome.
How has it changed your lives?
Simon moving in with Field Lane has quite literally transformed our lives. It has given us great peace of mind to know that Simon is safe, happy, and well cared for. We have fewer worries about his future. Throughout the whole time when he was in education, we worried about each transition from one year to the next; at each stage we posed the question, what next for Simon? It’s what every parent who has a child with Special Educational Needs (SEN) goes through. Now he’s settled more permanently, he can grow and develop as an independent person. Simon can be more like his two sisters, who have their own lives away from home. It’s also freed us up as parents and we can make decisions more easily without having to consider how to care for Simon. He still loves coming home and we see him regularly, but he has his own life. It’s good for everyone.
What impact has the past two years of restrictions had on Simon?
We made the difficult decision to bring Simon home at the start of lockdown in 2020 for a few weeks. We knew the restrictions would be hard for him to comprehend and manage. We were concerned about the impact on his mental health. Simon was very frustrated by his curtailed freedoms. He loves the gym and being able to exercise regularly – not being able to do that was a big sacrifice for him and a source of great frustration. Simon, like many people with autism, sees the world in black and white and it was a huge challenge to explain the reasons for all the restrictions, which he considered to be “neurotic”!
Based on your experiences, do you have any advice for other families looking for supported housing and care for their adult children?
Start talking about it well in advance. These conversations should be with your child as well as social services and the school. Ask what they want. But also consider what would be best for you too and be realistic. Being a parent of a child with SEN can be very stressful – you need to do what is best for both you and your child. Look around, do your research, visit potential places, talk to other parents and your own networks. Also, contact professional organisations and charities, such as the National Autistic Society. You need to dig deep – social care for adults with learning disabilities, is not as visible as other types of care.
What are your main hopes for the future – not just for Simon but the social care sector more generally?
For the care sector, I want it to be less of a battle for parents of children with SEN. We’d been fighting for over 20 years to get the best for Simon. Although it was a huge relief to get Simon a place in Field Lane, there are still battles with authorities over things such as funding, albeit smaller ones. The care system needs to recognise those battles and try to take some of the pressure off parents. More broadly, there needs to be a wider understanding and recognition of the care sector and what carers do for us. We need to shine a light on the profession. And of course there is the wider issue over lack of funding and resources, which needs to be properly resolved, even if it means us, as a society, paying more tax to fund it.
For Simon, we want him to be more independent. One day we hope he can move into a flat of his own, a place he can share with a friend. The challenge is to find a way to free Simon up to enable him to show his capabilities, within the official processes and procedures that are set down and must be followed by Field Lane and social services. We all need to work together to find a way through to give Simon and his peers the best opportunities to grow into independent and fulfilled individuals.
Pictured above: Father and son